Patient, therapist fight together to help those suffering from misdiagnosed disease

DENVER -- A Colorado man has been living with pain for several years, but today he finds the strength to fight the good fight.

“You know, I used to box when I was younger and so I thought this would be like riding a bike. It’s taken time to build up to it, to be able to stand there and go at it," Chris Gauntt said.

It’s something Gauntt didn’t know if he’d be able to do again.

“That might not seem like a big deal, but it is”, he said.

He’s not giving up. Gauntt is putting up the fight of his life -- for his life. Pictures of him from a couple years ago show a completely different person.

“My leg just kept getting bigger and bigger and bigger," he said.

At its worst, he had 10 gallons of fluid in his left leg.

“I remember one Friday, getting off work and I went, got in my Jeep and they were so huge, I couldn’t close the door," he said.

Doctors were taken aback by the size and the appearance.

“I had doctors try to come talk to me from across the room and I’d have to say, well come here,” he said.

After meeting with nearly five dozen therapists, he still had no answers. Over and over he was told: “Circulation issue, just a weight thing.”

With no other explanation.

“I even had one doctor tell me, 'You know, you might need to start preparing yourself, you might lose your leg,'" he said.

With no help and his leg only growing, Gauntt could no longer walk.

“We got a medical bed in my living room and just looking out the sliding glass door and it’s a beautiful sunny day and you can’t go out there," he said.

For five years, Gauntt went untreated.

“It was pretty dismal,” he said.

During that time, he was hiding behind closed doors and behind his vanity.

“I didn’t want anybody to see it, it’s embarrassing," he said.

It was a year ago when he stumbled upon Senior Occupational therapist Vikki Ralph. Within seconds, he received a diagnosis.

“In the first 30 minutes that I met Vikki, I learned more about lymphedema then I had in over five years," Gauntt said.

"When you are obese, you have a lot of weight, you have a stomach that’s just bearing down on these lymph nodes. It creates kind of a, if you will, a dam that just blocks that fluid from coming on up,” Ralph said.

As a result, Gauntt's left leg and left abdomen were collecting an excessive amount of fluid.

Cells get oxygen, nutrients and water every day to keep bodies ticking. Body tissue can only handle so much fluid and that’s where the lymphatic system comes into play.

The body’s drainage system takes excess fluid and transports it back into the blood stream. When the lymphatic system breaks down, the fluids build up in body tissues, causing pain and swelling.

Now that Gauntt had a diagnosis, his next fight was treating it. Once a week, he gets a deep-tissue massage.

He said it’s pretty painful because the therapists work to push the fluid back toward the lymph ducts. Lymphedema patients also undergo multilayer compression wraps.

In just 4 1/2 months of therapy, Gauntt lost 150 pounds.

“I think by far, a majority of that was out of my legs," he said.

No longer confined to his medical bed in his living room, Gauntt was walking again thanks to his therapist.

“Somebody caring for you that much, it’s emotional," he said.

Ralph knows there’s a need out there.

"Get calls and emails from patients from all over the place saying can you recommend a doctor? Give me a name of a doctor ... somebody who can treat lymphedema,” she said.

And her answer to them is heartbreaking,

“I’m sorry there is no one," she said.

This is a disease affecting more than 10 million Americans. That’s more than muscular dystrophy, Parkinson’s and AIDS combined, and there is no certified lymphedema doctor in Colorado.

Doctors spend less than 30 minutes of a four-year medical education devoted to lymphedema education.

Ralph is set to change that. She is educating doctors at University of Colorado Hospital, hoping to make them a destination for lymphedema treatment.

“I think what fuels me is the ability to make a difference,” she said.

However, it’s not just those in Denver championing awareness for the disease.

After doctors removed 20 lymph nodes, she immediately noticed her right arm swelling, a result of lymphedema and she decided to do something about it.

She went to Chicago to sit in front of the director of the American Medical Association and plead that doctors might be able to spend more time on lymphedema education.

“I’m going to resist the urge to tell him that I would like him to imagine having a cement block tied to his leg and living with that for a day, just 24 hours because I think if they did, then they would understand," she said.

Bates plans to go state by state, doctor by doctor to make sure the disease takes center stage.

“Well, I have an RV. I’m giving 'em a warning, I may be knocking on their door," she said.

Bates said she’s fighting for herself and for millions of others.

“It’s the bravery of people who continue to live their lives despite this that is so inspiring and keeps me in the fight,” she said.

It's a fight Gauntt continues to battle.

"You gotta stay really focused," he said.

And while he hasn’t won the war, it’s small battles he’s overcoming because life is just a long series of small wins.